PROMs in healthcare: is anyone listening to patients?

Lee Wemyss, Director and Founder, Dash Global, September 2024.

For as long as I can remember, healthcare hasn't really been measuring the right things. There is a strong argument that it still isn't.

Instead its been measuring what it always has: process, structural, financial, utilisation and patient satisfaction. While these measures are important, they don’t capture the full picture of how treatments impact patients’ health and quality of life.

Engineers are taught that you control a system through feedback. The essential feedback being the 'outcome' your wanting. No feedback and your system is unpredictable. It cannot improve or adapt.

PROMs are Patient Reported Outcome Measures

One influential figure in this area is Lord Darzi. In his 2008 report, “High Quality Care for All,” he emphasized the importance of measuring patient outcomes to truly understand the quality of care being provided.

In 2009 The Kings fund wrote: 'PROMs: counting what matters most to patients' and again in 2010 they followed this with 'Putting health outcomes at the heart of NHS decision-making'.

Reasons PROMs are considered revolutionary

PROMs are seen as transformative for healthcare because they provide valuable insights directly from patients about their health status and the effectiveness of treatments. Here are some key reasons (from Microsoft's AI Copilot) why PROMs are considered revolutionary:

1. Patient-Centered Care: PROMs shift the focus to patient-centred care by capturing patients’ perspectives on their health and quality of life. This helps healthcare providers tailor treatments to individual needs.

2. Improved Communication: By using PROMs, clinicians can better understand patients’ experiences and concerns, leading to improved communication and stronger patient-clinician relationships.

3. Enhanced Decision-Making: PROMs provide data that can inform clinical decisions, helping to identify the most effective treatments and interventions for patients.

4. Quality Improvement: Healthcare providers can use PROMs data to assess and improve the quality of care they deliver. This can lead to better health outcomes and more efficient use of resources.

5. Policy and Research: PROMs data can inform healthcare policies and research, providing evidence on the effectiveness of different treatments and interventions across various patient populations.

   
   

Overall, PROMs are seen as a way to make healthcare more responsive to patients’ needs, ultimately leading to better health outcomes and a more efficient healthcare system.

What are DaSH Global doing?

Healthcare generally (and the NHS specifically) has conspicuously failed to put PROMS anywhere near the centre of what they do. There are lots of reasons cited for this (which we explore in our next post: ).

Where we see the NHS have started to address PROMs it is usually done non-strategically: i.e. through a clinician with a special interest, or in a silo approach at centres of excellence, re-enforcing the postcode-lottery for patients.

To address this gap, DaSH are investing in building national Patient Reported Outcome Measure (PROM) Platforms based around national advocacy groups. We are already working alongside Lung Cancer Nursing UK, The Roy Castle Lung Cancer Foundation and Mesothelioma UK. This year we will be adding a platforms in Small Cell Lung Cancer and Blood Cancer. Its a free service for patients, the NHS and academia, paid for by industry.

In Conclusion

Anonymised real world evidence that includes both clinical treatment data as well as PROMs data is set to transform (speed up and improve) research into new therapies and drive better quality care. Putting patients at the centre 'and properly listening' - through PROMs, really could be transformative.